We started this note Wednesday evening after a banner day for Jon. Such peaks generally don’t run much past the day they happen in, but this time, the momentum just kept going:

From Wednesday:
Jon’s just bombing ahead in his reading/writing: Today his teacher phoned us in an incredible high state of excitement over his latest sample of creative writing (this story was totally unprompted; the only thing the teacher told Jon was that in book titles each word is capitalized):

My Favorit Book

My favorit book is Dr Soous The Sneaches . I love The Sneaches story because they have stars . Those stars were not so big . They were small . My gramma reads it to me because she bot it for me .
Jon

Wow. No copy typing – this was straight into the computer from his head. She had reminded Jon before they began that titles and names required capitals, and a couple of times he made a query such as:
J: “Does The Sneeches have capitals?
T: “Is it a title?”
J: “Yes, so it has capitals.”

She did give him a couple of other prompts, such as “Tell me about the stars”

Another impressive thing was that Jon was extremely insistent that he write the story. He had a choice of “free time” (playtime on computer) or “creative writing” and he actually chose writing over free time.

Earlier, while he was reading with his teacher, a call had come in and she told Jon she had to go to the office for a minute and she’d be right back to continue reading, leaving him alone with book while the EAs in the room were working with other kids. A few minutes later when Tami returned, Jon was appropriately ahead in the book, reading aloud, having just continued with his task. One of the EAs confirmed that he was reading it, not cheating or skipping.

And Jon showed several other social and developmental flourishes today to boot. His teacher tells us that he’s pretty much fufilled his year’s lesson plan, so for the next five months, it’s gravy. And she had planned a tough course to start with.

Well, Thursday, Jon did it again. Another creative writing story at a similar length about his favourite game. His newly displayed talents had turned a few heads in the school too – he read his story to both the principal and the vice-principal, and it looks like this will change certain curriculum issues for next year.

My Favorite Game

My favorite game is Arthers First Grade . I play it when I have some free time at home . On the computer at home I first do some tiping . In the game I do letters with DW.

Jon

Come Friday, 10 minutes before lunch, Jon announced that he wanted to go to the computer. They all thought he wanted to play a silly game that he had played earlier, but he announced that he wanted to do some creative writing and would not be swayed. Tami offered to give him a title, but he already had one in mind “Hop, Skip and Jump”. When she pointed out that was the name of his reading primer, he replied “It’s the title of my story”. He continued his writing ten minutes into the lunchbreak, at which point Tami – who had been negotiating and pleading – physically pulled him away from the computer on his fifth sentence, Jon yelling, “But I’m not finished! I’m not finished!” as he clawed at the receding computer. Tami said they could finish after lunch, but Jon pointed out it was Video Day. Tami reassured him that they would start the video late so he could finish his story. And suddenly he was as happy as a clam: “OK, we’ll finish it later. It’s time for lunch. It’s pizza day!”

For this story there was only one direct prompt, “What did the little red hen do?”. He remembered that all titles have capitals. He remembered that periods immediately follow words, with no spaces in between.

Hop Skip and Jump

I love doing some reading. I like reading Come Out Puppy. I like reading Help Find The Bear. My favorite story is The Little Red Hen. The little red hen took the wheat to the mill. She made the bred and she ate it all up all by herself.

Jon

You never know when this is going to happen, when the little gold nuggets will suddenly pan out of the silt. Three days in a row is even harder to believe, and that is even more precious. He’s starting to show his own vigorous and creative spark; not just something by rote that we trained him to do. This is a pure chunk of Jon that he developed, all by himself. And it leaves us breathless.

We all had a surprise this morning, and for Jon it was a nasty shock. Jon went to turn on the TV to get his morning fix of the Local Forecast before breakfast. He flipped to 518 to get the forecast in French; to his horror he was greeted by an onscreen box saying we weren’t authorized to get this channel. Zut alors! Météo Média was part of the digital channel freebie month last month! (We had no idea – we only discovered the channel two weeks ago.)

It was a very teary breakfast. I imagine that after school today Jon will be trying channel 518 in the vain hope it was all a nightmare this morning. He’s already hit all four of denial, anger, bargaining and depression at various times this morning; let’s hope acceptance isn’t far away!

I forgot to mention that about three weeks ago, Jon moved out of the three pre-primers and into a 150 page reading primer. The type size is slightly smaller again, but it’s the leading (the spacing between the lines) that is causing some stress. If Jon isn’t totally focused, he tends to lose his spot and jump from the line he is on. I know this is common for beginner readers, but it’s exacerbated by the cortical visual impairment: it’s is easier to see something if the visual field around it is empty. So we’ll have to proceed and see where we get.

One of the many “not-quite, but kind-of-like” metaphors for CVI is that it’s like looking at the world through a moving, rotating piece of Swiss cheese. It’s fascinating to watch Jon read, as he is constantly changing distance from the page, cocking his head and changing angles. Sometimes you’d swear he was looking at the other page! Anything to keep the words in view.

Lately the at home readings have been quite stressful for Jon, probably since he’s exhausted from school. Thursday’s late afternoon session took 40 minutes, including whining and attempted evasion, whereas at school, fresh and no-nonsense, Jon did the same text in 12 minutes on Friday morning.

Laura, his teacher and I had a chat about that and we’ve decide that for the time being, Jon won’t have to do reading homework from the textbook, but only from supplementals he’s being assigned. If he volunteers for more, fine, but the whole idea is to reduce the stress and anxiety of reading.

Here’s the a page from his current assignment, that he won’t necessarily be reading with us anymore. How will I find out what becomes of Joey?

His teacher thinks that this frustration, and certain evasions she’s seen, shows that we are approaching his current skill level in vision, in vocabulary and in reading skills. Which is great. The great strides of late have taken him to where he needs to be. Now the books will be introducing up to 10 new words a story. I personally think that the vision is slightly hampering things in an absolute sense, but given how far he’s come in the 60 days since he was reading 48 point type, I can’t argue with how we’ve done so far.

In the meantime, we’ll ease off on the gas a little for now. We want him to like to read. Especially if it’s always going to require effort.

Uh oh, trouble at school. Jon refused to stand up straight while in his stander, folding himself over and lying on the table. After constant reminders, then warnings, he had to be timed out. After a couple of minutes, his teacher Tami went over to discuss things and asked if he understood why he was timed out.
“Yes,” he replied, “Tami made bad choices.”
“WHO made bad choices?”
Pause.
“I made bad choices.”
Later in the day, same deal, this time Jon continually jackknifed over his wheelchair, despite cajolling and warnings. Time out again. Discussion. “Tami made bad choices.” Here we go again.
Jon’s teacher suggests that it’s regression, which you sometimes see when you have gains elsewhere (and we are seeing wonderful reading and improved spoken sentences).
The theme of the day continued. When Jon came home on the bus he had gnawed a good sized chunk out of the book he was reading, something he hasn’t done in a year and a half. Sigh. I gently pointed out that means no book tomorrow. His shoulders sagged.
Inside, I asked him if any bad choices had been made today.
He immediately looked at me and said “Tami made bad choices!”
Rinse. Lather. Repeat.
On the good news side, his lousy day did not hurt his reading or spelling homework–a year ago a day like this topped off by book restrictions would have resulted in crying and tantrums. He seems to have compartmentalized these things.

We were feeling a bit snowbound just after Christmas. Not everybody shovels their sidewalk and the snow doesn’t have to get too deep to be too much for a standard wheelchair (even a new purple one). So we brought out the Winter Wheelchair (AKA a Baby Jogger Special Needs Junior Outdoor Mobility Device. I’m not kidding.) This thing can plow through pretty much anything. Last year I even took it up Riverdale hill a dozen times while tobogganing with Jon (if I do it this year, it’ll probably be the last–he’s heavy and it’s steep!)

It’s not a perfect solution…Jon’s posture isn’t too great just sitting in the hammock (and it does affect him afterwards). But he loves the outdoors and we were all getting a little grumpy, and the crankiness literally diappears when we get out to the front step. It is a big emotional deal. So it’s all a balance.

Uh-oh. In the course of linking this post I notice that the Baby Jogger company has relegated the Special Needs series to their Non-Current Model section. Implying that it might be discontinued. This is a concern because within a couple of years, our guy is going to need a bigger Winter Wheelchair (ie a Baby Jogger Special Needs Outdoor Mobility Device). I hope they aren’t doing anything drastic.

It was just over 7 years ago that we took Jon to the opthamologist to hear her diagnosis that he was cortically blind–his eyes were fine, but something after the optic nerve, inside the visual cortex of the brain, wasn’t. And that he would likely see nothing beyond shadows for his entire life.

That night that Jon patiently posed for the cutest baby pictures we ever got from him. He seemed to know we needed a pick-me-up.

Meanwhile, visual therapist Mary Crow (or through Parentbooks ) had been waiting for this. She had visited us once, watched Jon, and said he’d have to be diagnosed before she’d be authorized to take us on. I’ll never forget Mary’s second visit declaration “He’s taking peeks.”

It’s a long story between there and where we are now. Like many kids with cortical visual impairment, Jon gained some function around 18 months, and it’s been a struggle to regain what we could from there. Jon’s vision is by no means normal–he percieves things visually in completely differently way from what we do, and always will–but we’re far ahead of what even some experts predicted.

This was with amazing support from a couple of great visual consultants, and a fabulous teacher who believed in Jon and started him on a bridge-reading course last year. It started with heavy repetition. We were all concerned with how well Jon could see the small words on the photocopied sheets, so for each book I made new booklets with the type heavily enlarged.

Last week, Jon hit the last of the series, Book 50.

It was a version of Goldilocks and the Three Bears, in simple sentences. The booklet I created for it was 27 pages long; most of the pages had four sentences of type (36 point size). We expected it to take Jon a few days, not for complexity, but for sheer length–you could see him get tired reading it. But he insisted on reading it through each time (and had a tantrum when I tried to introduce the concept of a “bookmark”).

He had it mastered in four days.

He’s moved onto the pre-primer of a new series. We decided to try him without type enlargement. He gets a little close to the page, but he’s able to read without enlarged type. And he’s already almost done the first book of the three-book series before moving on to the primer.

Book 50 feels like a milestone moment.